http://evenwithals.com/wp-content/uploads/2016/08/even-with-als-logo-300x117.png 0 0 garmt http://evenwithals.com/wp-content/uploads/2016/08/even-with-als-logo-300x117.png garmt2013-08-05 15:48:032013-08-05 15:48:03This one is pretty ugly... (but I wasn't hired for my good looks anyway)
(email to colleagues at work)
This is a long, serious and slightly personal email. If you know me, have worked with me or expect to work with me in the future (so essentially, if you receive this e-mail), please take careful time to read it properly.
A few months ago, I started noticing a small speech impairment. More recently, I started to notice a slight decrease of power in my right hand. Nothing serious, but I did decide to go and see my doctor. She referred me to a neurologist, who did a battery of tests; that neurologist referred me to two other neurologists. To make a long story short, and I’m sorry that I can’t find the best way to bring this news gently, today I got a confirmed diagnosis: I have ALS. If you don’t know what that means, I recommend you to read THIS link. I’ll sum it up for you in three lines: The connection between my brain and my muscles will slowly get worse. Right now there is no known cure and it always results in death. About 50% of patients that receive this diagnosis live another 3 years. A very small portion of patients live past 10 years. Meaning: I’m sick but I’ll be around for a while, at least.
As diseases go, there aren’t really that many that are more ugly, but the way I look at it, things could be a lot worse. There are so many ways to die, all of us do at one point, this way it’s just a bit earlier than expected and a bit more in-your-face than perhaps I’d like, but hey. An average expectancy of three years isn’t too bad; I could be run over by a car or get shot by an angry customer any average day. I’ve already done enough living in the past 36 years to put your average 90-year old to shame. I’m likely to keep all my cognitive abilities throughout, I’ve got a good going-in position (I’m young, otherwise healthy, strong, etc) and so far the process has been guided by extremely professional and compassionate care-takers. The support of my wife, friends and colleagues who knew about the suspected diagnosis are heart-warming (and needed). There’s clinical trials and research that may lead to a cure yet in my lifetime, and if not, eventually we’ll kick this just like we (mostly) kicked other ugly diseases.
This is the point in the email where I explain how grateful I am to be working for a company like ours. I said this to my first project team and I will say it to all of you, from the bottom of my heart: it is truly an honor and a pleasure to work with people like yourselves on the type of projects that we do. In my career of four companies in 15 years, the happiest years have been the last three, since I joined this wonderful group of driven, creative, annoyingly pedantic know-it-all’s. And even though ALS has cured me of being addicted to working (no more 90-hour working weeks), I would like to continue doing which has given me so much pleasure and fulfillment over the past years: working on interesting projects with smart colleagues. Well, that and kitesurfing.
Now for the bad news. I’m the one with the disease, but all of you are going to be affected by it in some small part. Don’t worry – it is NOT contagious, the chances that you will get it are pretty much zero (occurrence is 1 in 100.000, with 80% of patients over 50 years of age before they get it; I won a real nice lottery with this one so you don’t have to). But you will see me around the office or with projects and that may be confrontational. I don’t know yet what the outlook is going to be, if and how we’ll make this work in terms of doing regular work and for how long I’ll be able to continue, but at the very least, I’ll be back (spoken in the voice of Arnold Schwarzenegger), so you’re not rid of me just yet.
Action required on your end? Well, for starters, you’re going to keep on treating me like a normal colleague. Just because I speak a bit slower and can’t win with arm-wrestling anymore doesn’t mean I’m any less able to outsmart you (and I will). You’re welcome to approach me with questions about this (preferably once I’m back in the office) or to completely ignore it altogether if that works better for you. For the next few weeks I’m out of office, figuring out how to deal with this “change of plans”, but like I said: I will be back, given the limits of what will be possible and desirable for all of us.
See you all soon, take care, and be grateful if you’re healthy,